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Tuesday May 30
Well were off on our big trip. I'm tremendously tired since I
stayed up last night to work on my bathroom home improvement
project. When you live in an old house the projects never end.
I'll have to ask about that when we visit the White House.
Luckily all three of us were able to get some sleep on the
plane. We arrived in Washington about an hour and a half late
after some delays. We were met at the airport by a nice representative
from CMN whose name escapes me (most names escape me).
We arrived on the same flight as the Powell's. Gavin, Michelle
and Landon are from Nampa ID. Landon was born a few months premature
and had quite a fight but is doing great now. We boarded a bus
to the J.W. Marriott in down town
Washington very near the White House. I was amazed at the number
of large sand stone buildings there are in Washington. The whole
down town looks like it will last forever.
We attended a carnival for the CMN
kids and their families at the hotel. It was very nicely
done with lots of games for the kids. Zach was a little overwhelmed
by all the excitement and we were a little overwhelmed to be
with all the kids and their families. We're used to being around
the parents of other kids who have been in the hospital but this
group is different in a couple of ways: One they have been through
so much and Two they have all agreed to have their stories shared.
Sara a 3 year old near drowning victim was very cute, especially
with those chubby cheeks. I visited a little with her dad Brian.
Thursday June 1 2000
Thank goodness they didn't schedule anything early for us, especially
with the time change it was great to sleep in. Gina and Zach
went to lunch at the National Press Club where Marie Osmond gave
a very moving and sometimes emotional speech about CMN, hospital
experiences she'd had with her own kids. According to Gina lunch
was very good and the speaker was better. She also mentioned
that our meals, hotel and travel expenses were donated by the
companies who provided them and that 100% of the CMN donations
go to your local hospital.. (That was important to Gina &
I.) Gina sat with David Paul Dotson and his family. He is a 14
year old gun accident victim with a very charming southern drawl.
In the mean time Melissa (Gina's sister who made the trip
with us)and I walked by the White House, over to the Washington
Monument and then along the reflecting pond to the Lincoln Memorial.
From there we turned right and visited the Vietnam Memorial and
then walked back over toward the Whites, had a sandwich and walked
back to the motel. It's really something to see all this stuff
in person, I'm glad we got a chance to see it.
That evening we had a Champions award dinner hosted by Mary
Lou Retton. They showed a brief video on her 1984 Olympic gold
medal which reminded me how old I had gotten. Also they introduced
the kids and gave each a medal. As will become customary for
our trip, Zach slept while they took the photo. I visited with
Regan Clark's mom about her beautiful state of Wyoming. Reagan
is a 9 year old who had gone through enough medical issues for
a lifetime. She lost a kidney to cancer, had a bone marrow transplant
and a total hysterectomy.
Many kids have been swimming in the hotel pool but as much
as we'd like to let Zach swim we're still afraid of public pools,
especially when there that full because of his immunosuppression.
Maybe some day we'll get Zach a pool at home.
Thursday June 1, 2000
We loaded the busses at 8:30 this morning (5:30 Pacific time).
I think we're finally starting to adjust to the time difference.
I even managed to get up earlier and stumble through a brief
radio interview with a morning show back in Spokane. We carried
Zach down to the busses still asleep in his pajamas but he was
awake before long. We had a great bus tour of the city including
all the monuments and capital hill.
I think a person could spend a year here as a tourist and not
get board. We had a nice picnic lunch with all the families at
the FDR memorial. From there it was
back on the air conditioned bus for the ride to the White House.
We got some pretty special treatment since we didn't have to
wait in any lines or anything for our tour. We toured the ground
floor including the East ball room and the red, blue and green
rooms. Zach was pretty fussy since it was nap time so we stayed
towards the back of the group to try not to be too disruptive.
Marie Osmond, her nanny and 3 of her
kids were with our group and they were having some of the same
nap time problems so we enjoyed their company while we all tried
to keep our kids happy. Marie is very down to earth and we enjoyed
having her be just one of the group. Since president Clinton
was in Germany and Mrs Clinton was off campaigning for a senate
seat in New York we met with secretary of Health and Human Services
Donna Chelaila. She went way out of her way to be friendly maybe
sensing that some were disappointed at not meeting the president.
After several hot sweaty photo "op."s which Zach slept
through as is his custom we boarded the AIR CONDITIONED busses
for the ride back to the J.W. Marriott. After Zach's nap we were
taken by van to a nearby studio for a live interview during the
Channel 4 news in Spokane. Both Gina and I had a hard time adjusting
to the ear pieces and talking to the camera when you can;t see
who you're talking to. Mary Lou has had a lot more practice than
us and was much more comfortable. We wanted to say how great
we thought the cause was and how honored we are to be able to
help raise money for CMN but all we managed to say was that we
were having a good time. I think we need a little more practice
before were ready for much more live T.V.
Friday June 2 2000
Again we loaded the busses at 8:30 this morning. This time it's
for a charter flight on Delta to Orlando. The CMN kids and families
filled up an entire plane. Zach did great on the flight again.
As long as he has a window he rarely gets bored. We arrived in
Orlando and were bussed to Coronado
Springs Resort, it's one of the Disney properties that has
bus service to all five Disney area's: The Magic Kingdom, The
Epcott Center, The Animal Kingdom, Downtown Disney and the water
park. After letting us get settled in our rooms (CMN volunteers
brought everyone their luggage, over 60 families and it's blistering
hot outside!) they bussed everyone to the movie studio and provided
us with concessions and a movie. "Dinosaur" was Zach's first movie and it was a big hit
with him. He was very excited the whole movie so we're excited
to take him too his next one.
Saturday June 3, 2000
We got what we thought was an early start this morning and headed
for the Animal Kingdom..It was
already getting how by the time we got there so we headed for
the Rain forest Cafe and ate there. It was nice and cool and
a beautiful setting although with the thunder Zach preferred
it under the table. We spent the rest of the morning at the the
Animal Kingdom and took in the lion kings show but it was just
too hot to enjoy ourselves. We caught a bus back to Coronado
Springs where we were staying and from there we got right on
a bus to take us over to the Disney Institute for the kick off
of the telethon. Not only was the studio nice and cool but also
it was just the champion families and we had great access to
all the stars and groups there. Zach slept through Bill Cosby
who was great with all the kids. It was fun to see him interact
with a lot of the older kids we had met during the week. I think
that was the most fun of the telethon. Mr Cosby was even more
entertaining in between takes. When the cameras stop he just
keeps going with the kids. After the Cosby taping with went back
to our room for a little bit and then it was off to the Magic
Kingdom. I thought Zach would be too young to enjoy a lot of
things but boy was I wrong. He had a brief tantrum when he got
off his first ride in fantasy land but once he figured out it
was just one ride after another he would take Gina and I each
by the hand and practically drag us to the next ride. Not once
was a ride too scary for him including the haunted house and
the spinning rockets in tomorrow land. What a blast! I can't
remember Zach ever having more fun.
Sunday June 4th 2000
We slept in today since we have to get up so early tomorrow.
We got everything packed and went to breakfast. From there we
caught the bus to the Disney Institute for the last of the telethon.
Gina got lots of autographs between takes as they finished up.
They raised $208 million which was more than their goal. After
the telethon we took Zach for one more night in the Magic
Kingdom and made sure we hadn't missed any rides that we
were tall enough for.
Monday June 5th
We caught the bus at 5:30 for the airport (2:30 A.M. Spokane
time!). While we waited for our flight with the Powell's (from
Idaho) we had some breakfast and looked through the U.S.A. today
to see pictures of the CMN kids. We had a nice flight home. What
a wonderful trip.
Thursday June 7th
We did another blood draw yesterday and Zach's Prograf level
was 8.5. Very close to our target of 9 so maybe we finally have
a handle on it. I called Dr. Garabedian and got a prescription
for EMLA to numb the injection site during Zach's blood draws.
He needs blood draws so frequently that I'd like to make it easier
for him. I told Dr. Garabedian I was sorry for bothering him
since I knew how busy he was taking care of his and Dr. Allen's
former patients. Boy did I get a lecture... Dr. Garabedian is
NEVER too busy for Zach. That's the kind of lecture I like to
get!
Monday June 26th
It's hard to believe it's already time for another blood draw.
With the problems we've had getting Zach's levels right lately
it seems like all we've been doing are blood draws. Today is
our first time using the EMLA cream to numb the site of the blood
draw so we'll see if that makes things any easier. As is our
new procedure now just Zach and I go to the blood draw since
Gina has too hard of a time holding him and isn't a big fan of
anything with blood, especially when it's Zach's blood. Today
went especially smooth though, Zach was in a great mood and very
excited to ride the elevators and look out the windows of the
Heart Institute at the beautiful view north across Spokane. Even
though we couldn't get anything until the second arm, it still
seemed to go easier so I'd say the EMLA cream was a success.
From there Zach and I went to Hangman Valley Golf course and
signed Gina up for some lessons. Our goal is to involve ourselves
in activities that we can involve Zach in later. Activities that
Zach can enjoy and excel at in future years without concern of
physical limitations. If it does turn out that Zach can't play
some of the full contact sports or real aerobic sports we are
still hopeful that golf, baseball and bowling will be fun physical
activities that he can enjoy.
Wednesday June 29th, 2000
Gina took Zach in to Dr. Garabedian's. I had to work so Dr. G.
talked to me on the phone. The Prograf level was a little high
so we're going down to 8 ml twice daily. Also we got the o.k.
to take Zach swimming in public pools and it was confirmed by
Stanford. We're still a little nervous about it with the immunosuppression
but it's been hot and our vacation is coming up so we're looking
forward to some time in the pool for the first time since before
the transplant.
Thursday July 6th
We're very excited to leave on vacation tomorrow for a week.
I only have two things on my agenda for a whole week: Spend time
with Zach & Gina and do some golfing. It's a short list but
we're ready for a vacation with a short list. Zach had another
communication breakthrough last week. He took Gina's hand and
put it to his diaper when it was wet. Sounds small but every
bit of communication is a big step for us. Zach is also more
interactive physically all the time. Lots of tackles and wrestling
is fun for both of us. I received an email today from Marilyn
Lott. Her son Alan has Cystic Fibrosis
and is in dire need of a lung transplant within the next couple
of months. They are considering a living
donor transplant where a lobe of two living donors would
be transplanted. Please keep them in you prayers. You can visit
their site at http://www.alanlott.com.
Friday July 14th
It was the last day of our vacation today and we took Zach to
Silverwood (A large amusement park in north Idaho). Zach's only
limitations on rides are his height. He's afraid of nothing,
even the roller coasters. What a great day. This kid was made
for amusement parks.
Thursday August 3rd
We've been going to the park a lot with Zach. We trade off between
the playground/sandbox where there are lots of other kids and
then we head of to the duck pond. We're hoping being around the
other kids helps with Zach's socialization. Zach still looks
good and unless we mention what he's been through to other parents,
no one can tell the difference except maybe that he's still not
talking.
Friday August 4th 2000
I attended the funeral of Tom Wolsborn today. He was my high
school basketball coach. In a town the size of Odessa basketball
was life, so he was pretty influential to me. Coach Wolsborn
was a runner. In fact he ran several miles every morning and
he's dead at 53. Seems pretty unfair but destiny doesn't pick
favorites. The heart is so fragile and so important. It again
reminds me how lucky we are to have Zach. Our thoughts and prayers
are with the Wolsborn family, Myrna, T.J. and Kurt.
Sunday August 6th 2000
We had a great evening today. We took Zach to the par 3 golf
course. Gina golfed and Zach and I were her caddy. Actually she
had to carry her own clubs since I had my hands full just trying
to keep Zach from running on to other people's fairways. Zach
doesn't observe golf etiquette much and he loves to pick up your
putt before it stops if you don't watch him but we had a lot
of fun. Maybe in a few years he can chase his own golf ball.
Monday August 7th
Zach's blood draw went easier than ever. He's not afraid of the
poke and the EMLA cream we use to numb his arm first seems to
really help.
Wednesday August 9th
Great Dr.visit today. No signs of rejection at least with the
heart and everything looks good on the echocardiogram. The lungs
sound good but as usual it's tough to tell anything about the
lungs since Zach's still to little for any of the tests that
could tell us anything.
Saturday August 12th
Well I haven't thought about it all day today. Today is two years
since we learned that Zach needed the transplant. My how time
flies. We sent Zach to his Grandma &
Grandpa Zagelow's house in Odessa overnight tonight. It's
the first time for Zach being that far away overnight ever. We
premeasured all the medications and all should be fine. We're
making progress letting Zach have more freedom and just be a
little boy.
Friday Sept. 8th
Zach's doing great. We're planning for his two year check up
at Stanford the week after Thanksgiving. Hopefully this Thanksgiving
will be better than the last one! In fact we have an appointment
with the Neurologist Dr. Lafond on Sept. 26th. to go over the
MRI from last year to learn a little more about what may be holding
Zach back.
Zach's last Prograf level was a near perfect 8.5. We've been
going through a lot of follow up to get there and we're back
at a dose that we were at two months ago when his levels were
too high. Sometimes those levels just don't make sense and every
bad level means a dosage change and another poke to get is blood
tested a week later, ouch! |
